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Rectal Stump Inflammation


Tony H
(@tony-h)
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Hi everyone , I'm about 3 and a half years post op (sub total colectomy) , still have my stump and for the last 6 months or so I have had some bleeding just on the inside , my GI has proscribed budenfalk foam and salofalk foam , the salofalk foam was a nightmare to take , as as soon as it went in , it caused cramps and came straight back out , at the moment I'm trying the suppository treatment salofalk  (mesalazine) and budenofalk( budesonide) with no real improvement ,

I think in the long term I'll be getting rid of the stump , has anyone with the stump had this problem ? and how long should I wait before going the surgical route , there's not really much blood , I suppose spotting would describe it , not like the big amounts pre surgery but there is a lot of colon cancer in my family and I'm kinda worried about it , 

and small rant , why do doctors prescribe foam enemas to people with only a small stump of their colon remaining ? its like over filling a balloon , and really uncomfortable .  


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VeganOstomy
(@veganostomy)
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Posted by: @tony-h

I think in the long term I'll be getting rid of the stump , has anyone with the stump had this problem ?

Hey Tony, I think you'll find that quite a few people who keep the stump will develop some kind of problem at some point, but many have no trouble at all. 

It's hard to predict who will have problems, but I know that many surgeons will suggest removing the stump to avoid future problems, especially if there's no plan to use it. 

I have Crohn's that went after my colon and rectum, so I had mine removed as soon as it was safe to (only a few months after my ostomy surgery). Some people do wait, but there's always a risk of inflammation. 

I had to use rectal steroid foam early in my Crohn's diagnosis and yes, it was not very pleasant or comfortable. 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LK
 LK
(@dlkfiretruck)
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Hey Tony...You have very legitimate concerns here.  Some key words doctors respond to are "quality of life". If you feel this surgery is best for your situation do not be afraid to go for a second opinion.  Keep track of your personal care time in and out of the washroom  including Ostomy care and take that with you to the office. Don't be shy, tell them your concerns up front & ask for reasons if they say no. You have the right to a second opinion and as good a quality of life as you can get.  Sometimes understanding the no helps.  But I would certainly press the topic of cancer as an added concern.

All the best

Linda


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UCtoOstomy
(@uctoostomy)
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Hey Tony,

I struggle with my rectal stump as well and can relate to everything in your post.  I've tried a mesalamine foam and thought my little stump exploded inside me.  The pain was excruciating and I can not retain any other liquid medications (enemas/foams).  Used mesalmine suppositories for a couple years, and nothing the last few months.  The inflammation I experience can be bad, feeling like colitis, urgency and accidents often.

I signed up for surgery yesterday during my surgery consult.  Hoping to move on from this pain in the a$$.

Let me know if you have any questions, as I had two pages of questions for my surgeon. Happy to help. That's what we are here for.  


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Tony H
(@tony-h)
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Posted by: @dlkfiretruck

Hey Tony...You have very legitimate concerns here.  Some key words doctors respond to are "quality of life". If you feel this surgery is best for your situation do not be afraid to go for a second opinion.  Keep track of your personal care time in and out of the washroom  including Ostomy care and take that with you to the office. Don't be shy, tell them your concerns up front & ask for reasons if they say no. You have the right to a second opinion and as good a quality of life as you can get.  Sometimes understanding the no helps.  But I would certainly press the topic of cancer as an added concern.

All the best

Hey Linda , thanks for the support , Im really lucky with my GI , she is really proactive and is my guardian angel on earth , when and if I need surgery she will make sure I get the best as fast as possible , at the moment in Ireland our health is just about managing with the high number of covid cases , which are reducing fairly quickly in the last month , 

I have appointment with a really good colorectal surgeon in June and scopes before that , 

hopefully when I get the surgery he will sort out the small hernia I have near my ostomy at the same time , 

thanks again for the support and stay safe .


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Tony H
(@tony-h)
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Posted by: @uctoostomy

Hey Tony,

I struggle with my rectal stump as well and can relate to everything in your post.  I've tried a mesalamine foam and thought my little stump exploded inside me.  The pain was excruciating and I can not retain any other liquid medications (enemas/foams).  Used mesalmine suppositories for a couple years, and nothing the last few months.  The inflammation I experience can be bad, feeling like colitis, urgency and accidents often.

I signed up for surgery yesterday during my surgery consult.  Hoping to move on from this pain in the a$$.

Let me know if you have any questions, as I had two pages of questions for my surgeon. Happy to help. That's what we are here for.  

hey UC , your description of your little stump resonates well with me  , it really feels like a grenade going off with nowhere to go 

, I think the two  Mesalazine daily  suppositories are making a little improvement  but as soon as the covid menace eases off I hope to finally have the surgery , I really cant complain to much though as the ostomy surgery has made a huge difference in my life,

my only regret is that i did not have it 30 years ago ,

best of luck with the surgery and stay safe .


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LK
 LK
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@tony-h...I'm so glad to hear that Tony.  We hear about CO19 out your way on the News & my heart goes out to everyone dealing with high rates of it. This has been an interesting experience to say the least! 

 I know I fought long & hard to get where I am today too.  My GI is a young lady also & smart as a whip! I appreciate her like crazy!! 

I discovered quickly that Support is what this site is about and throwing in tips & tricks is another benefit of it. The endless knowledge Eric instilled in his work here is extremely admirable!  But knowing I was not alone when I felt terribly like I was made a huge difference in my life. I know that we can give back to Eric by supporting him when we make Amazon purchases. I'm sure every penny helps. 

All the best & don't be a stranger! Your experiences will help others when your up to it! 

Linda


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